Evidence submitted by the NHS Confederation
(EPR 57)
The NHS Confederation is a membership body that
represents over 90% of all statutory NHS organisations across
the UK. Our role is to provide a voice for the management and
leadership of the NHS and represent the interests of NHS organisations.
We are an independent organisation.
The NHS Confederation welcomes the opportunity
to give evidence to the Health Select Committee on the Electronic
Patient Record and its use. This evidence sets out our views,
based on feedback from a cross section of our member forums.
EXECUTIVE SUMMARY
— There is a lack of clarity and understanding
both with patients and within the NHS over the information which
will be held nationally and that held locally.
— NHS computer systems already hold
and exchange patient demographic data.
— The security built into the National
Care Record System (NCRS) is tighter than that currently in place
for either existing computer held or paper based systems.
— If patients are given the option
to opt out it will be important for them to understand the potential
clinical risks of doing so.
— A greater level of public awareness
and engagement is required.
— Many in the NHS have concerns over
the scope and architecture of the overall programme, though in
many cases this may be due to a lack of clarity within the service
about the detailed plans.
— Delays in the delivery of key operational
systems which feed NCRS, such as Patient Administration Systems
is causing real problems and costs within the service.
— Generally, government policies such
as the 18 week target and the choice agenda will be severely hit
if the new computer systems are not made to work effectively.
FACTUAL INFORMATION
1. What patient information will be held
on the new local and national electronic record systems, including
whether patients may prevent their personal data being placed
on systems
The NHS Care Record Service comprises two groups
of data/applications/systems:
Locally held detailed electronic records will
typically contain:
(a) Name, address, date of birth and NHS
number.
(b) Details of health conditions such as
allergies, asthma or a heart problem.
(c) Details of any medicines and diagnostic
test results.
(d) Notes (including diagnostic images) relating
to diagnosis, treatments, therapies, operations.
(e) Notes on contact details with the patients
such as out-patient visits, GP attendances, including the details
of clinicians providing care.
(f) Correspondence between clinicians providing
care.
(g) Planned treatment or visits including
reminders.
(h) Occasionally additional information that
the patient has shared where this is relevant to the patient's
health care e.g. about family or work.
(i) Applications that support the clinician
in delivering care such as electronic ordering, prescribing, scheduling,
decision support, alerts and reminders.
Nationally held summary records that are subset
of the detailed local records and will hold information that is
potentially required to be shared between caring organisations
and teams. Summary records are held by the Spine. The Spine comprises:
(a) The Personal Demographics Service
(PDS) that stores basic demographic information about each
patient together with their NHS Number.
(b) The Personal Spine Information Service
(PSIS). This is a summary of patient's clinical information,
such as allergies and adverse reactions to medicine.
(c) The Secondary Uses Service (SUS),
uses data from patient records to provide anonymised and pseudonymised
business reports and statistics for research, planning and public
health delivery
(d) The Spine also provides a set of Security
Services, to ensure access to information stored on the Spine
is appropriately controlled (see below).
Clinicians have a duty of care under the professional
rules of the GMC and other medical practice to record personal
and clinical information about their patients. The Care Record
Service will become the primary patient record and source of information
for the individual or groups of clinicians providing care for
patients. It may neither be possible nor advisable therefore for
patients to seek to prevent their personal data being placed on
these systems.
Patients need to be reassured that the information
held is confidential. There are arrangements within the design
of the Care Record Service to limit the sharing of personal data
once it has been collected. Patients will be able to request that
specific personal data items are place in a "sealed envelope"
and not seen without consent. This will allow patients to determine
which parts of their records should be accessible to those who
provide care. The sealed envelopes are under development but alternative
interim arrangements are in place for the early deployments of
the spine.
The Chief Executive of the NHS recently held
a summit on the issues surrounding the national programme at which
the NHS Confederation and many patient groups were represented.
Not surprisingly the issue of patient confidentiality was prominent
in the discussions. All parties agreed that further explanation
and communication over the current and proposed safeguards are
required. It is not clear that patients understand that the information
available nationally will be only a small subset of their medical
history. Many patients assume that all their information will
be available across the country.
If patients are able to prevent their personal
information to be placed on the system, the question becomes how
a national system then operates with some participants excluded
and to what extent are they prejudicing their own care? The systems
in place will be the basis not only of delivering care for patients
but also the business processes and payment systems. Will patients
be compelled to allow their demographic details to be held but
have a veto on the medical history aspects? Demographic information
is already stored on NHS systems and transferred between them,
albeit on an historic basis. NCRS makes this information available
in real time wherever the patient presents for treatment and,
for the first time, includes key data which may be invaluable
to those providing the treatment.
2. Who will have access to locally and nationally
held information and under what circumstances?
Once the new service is fully in place, only
those who are directly involved in a patient's care will be able
to access an individual's information on the Care Record Service.
They will need a smartcard, protected by a chip and pin, which
are only issued after thorough security checks. Even then not
everyone involved in a patient's care will be able to see all
of a patient's records. The amount of information they will see
will depend on their role. Other care professionals—such
as social workers, with a need to know, may also have access to
parts of a patient's records.
Others involved in public health, research,
planning and statistics will have access to anonymised and pseudonymised
information on the Spine.
3. Whether patient confidentiality can be
adequately protected
The Care Record Service has a set of security
measures, to ensure access to information is appropriately controlled.
An automatic record will be kept of anyone who has accessed an
individual care record; who they are, what information they accessed
and how they processed the data. Patients can ask to see this
record.
These are much stronger measures than are in
place for current paper records where no record is kept of who
has access or how the data is recorded or used. Also, with access
being limited to staff involved in the care of individual patients,
the normal best practice rules of confidentiality still apply.
It remains an act of gross misconduct for staff to divulge confidential
information.
4. How data held on the new systems can and
should be used for purposes other than the delivery of care eg
clinical research
Only anonymised and pseudonymised data can be
used for research, public health, statistics and planning. A number
of exceptions exist where patient identity can be shared. These
need special permission and include:
— reporting some infectious diseases;
— reporting gunshot wounds to the police;
— following a court order;
— when a serious crime has been committed;
— where there are serious risks to
the public or NHS staff; and
5. Current progress on the development of
the NHS Care Records Service and the National Data Spine and why
delivery of the new systems is up to two years behind schedule
It is important to recognise that this is an
extremely ambitious project. It is for the Project Sponsor and
Responsible Officers to explain any delays. We understand that
there has been some diversion to develop systems in support of
new NHS priorities—Quality Outcomes Framework in support
of the new GMS contract, Choose & Book, PACS, etc plus huge
deployment volumes as evidence of real progress.
The NHS Confederation can give some perspective
and feedback from our member NHS Trusts and Primary Care Trusts.
NHS organisations continue to be fully committed
to the overall vision of the NHS Care Records Service (NCRS).
However, member feedback indicates
— A persistent feeling of disconnect
with the National Programme. At a local level members are concentrating
on the local deployment of systems as they become available under
the National programme. They are not at all clear on either the
content or the progress of NCRS. They do not see it is a component
that they own or have any particular responsibility for. As a
result their commitment to NCRS is somewhat limited. This affects
their ability to be advocates for the initiative both within their
organisations and with the wider public.
— Many IM & T managers in the NHS
see that based on their understanding of what is to be held on
NCRS the programme as too ambitious in its scope and that the
architecture is over-complex. Many are unconvinced that the balance
between what is held centrally and what is held locally may not
be appropriate. Concern has been voiced that the amount of clinical
information really required for a patient who is treated physically
away from their usual address is minimal and restricted to allergies
and high risk factors. The view is that restricting the national
database to only these items would both aid the implementation
and reassure patients around the confidentiality issue. The concern
is that the range of clinical indicators to be held at national
level is likely to grow and that this itself will undermine public
confidence in the security of their personal information.
— The National Care Record System (NCRS)
consists of the spine information held centrally and the detailed
clinical record held locally. Much of the information required
to be held locally is already held albeit in an incomplete and
piecemeal basis with General Practice. NCRS appears not to have
the confidence of the public or clinicians. Arguably this is in
part because ownership is not resolved. Better to build on the
practice data sets. Make it clear that the practice, Commissioning
Group and PCT are responsible for the quality of the data and
making it available to providers when required. The NCRS spine
should only hold the basic demographic details which can point
a provider to the correct PCT, PBC and Practice, together with
any key risk factors. Indeed should we get national identity cards
in the future, this information could be held there. Practice
Records will need to be both complete and available. They must
be the property of the PCT, held by the practice.
— Delivery of NCRS is wholly dependent
on the availability of the key feeder systems such as hospital
patient administration systems (PAS). The deliverability of these
key systems has been, to say the least, disappointing. Many Trusts
are having to extend contracts on existing and outdated PAS, deploying
patches and fixes to maintain required functionality.
RECOMMENDATIONS FOR
ACTION
— Initiate a communication exercise
with the public and the professional associations through existing
patient groups and the media around the elements and safeguards
of NCRS.
— Provide better staff briefing and
communication with key NHS staff around the scope and architecture
not only of NCRS but of the National Programme for IT as a whole.
— Restrict to a minimum the amount
of clinical information held at the national level.
— Designate PBC Groups as custodians
of individual patient clinical data. Build the locally held NCRS
from existing GP systems.
— Provide a realistic timescale for
the implementation for key feeder systems.
NHS Confederation
March 2007
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